Thursday, 16 June 2011

Abuse on a large scale is not just happening behind closed doors as in the recent exposure at Winterbourne but in the community - on the streets - in public – by the public. Disability Hate Crime.

I did not realise that people calling C names or expressing hateful opinions about C is verbal abuse – and is a Hate Crime. Over the years I have accepted the staring, muttering, making comments as part of C’s life. Not only did I accept it but I expect it every time I take C out. It is part of our lives that I have had to get used to so it doesn’t get to me. Thankfully C is oblivious to it (as far as I can tell)

C’s invisible disability is very visible! And there have been times I’ve felt harassed and in danger.

I recently had some training in Disability Hate Crime which touched on genocide. And with Panorama still fresh in my mind I have decided no more! The kids/adults muttering abuse – calling C names (and we live in a respectable area) have been getting away with it as I have been ignoring it I now realise could be the predatory corrupt caregivers - the emotional and physical abusers of tomorrow.

Disability hate crime is a direct attack on a person's identity and an infringement of their human rights, perceived by the person or any other person. It doesn’t matter that the person doesn’t understand it.

There have many headlines over the years of the failure of the police, prosecutors and some care organisations to take Disability Hate Crime seriously. Fiona Pilkington being a very high profile case – after it was too late. A mother who killed herself and her daughter because no one listened.

Unless we as a society recognise what disability hate crime is and start reporting it nothing will change.

I reported my first Hate Crime last week and was impressed with how the local police dealt with it. They couldn’t follow it up but it has been added to the statistics – I’m sure I will be adding many more.

By reporting this will help the police get a better idea of the level of hate crime in your local area and improve the way Police respond to it and could prevent escalation of seriousness. More funding and resources maybe allocated.

Friday, 3 June 2011

People make assumptions about why I ‘put’ C in a residential home – it’s so hard you poor thing you couldn’t cope or so I could have a life or because I just don’t care as those places are so dreadful. But all these couldn’t be further from the truth.Maybe that’s a blog post for another day.

People also make assumptions about residential homes which have been reinforced by the recent Panorama undercover care programme that all homes are like this - it’s the tip of the ice burg.

As a parent respect, dignity and value are not only vitally important for C but for his staff as well. They are C’s backbone and a reflection of how C is doing.
My way of supporting and building relationships was to set up a parent forum who meets regularly, this helps with communication, transparency and trust. Working together.

C’s service provider has just sent out a response about the programme to all the family carers to reassure us about their commitment. And a senior manager has sent me a more personal account to share;

It’s the evening of Tuesday 31st May just after 9pm, I’m listening to the radio and working my way through a big pile of ironing. I get a text from a journalist friend “R U watching this care thing on Panorama, its horrible”. I suddenly remember a colleague last week telling me about an exposé on a care home and I’d forgotten, so dash to switch on and suddenly I am gripped to the TV, the longer I watch a tightness spreads over my stomach and I’m overcome with a helpless anger. Over and over in my head then out loud at the TV screen “why the bloody hell are you just standing there?” I shout at the care staff on the TV. I’m angry at the journalist, I’m angry at the staff, my mind races as the mobile texts start flooding in, one then another then another....

I work in social care for an organisation which has more than 10 care homes and a supported living agency serving people with challenging behaviour and learning difficulties. I work with many people who didn’t understand that night why they were watching the staff in a modern day care home abusing vulnerable human life in a way they wouldn’t treat a rabid dog.

I start to read the text which range from Care Home Managers, Deputy Managers and Care Staff and external colleagues, my friends too all astonished at the ghastly images they are viewing. I get text from these sweet people telling me of their tears and sadness, all of them asking ‘why?’

The programme ends and I get a text from a Male Manager whom I respect for his outstanding commitment to the human rights of the people he serves, his text reads “well that makes us all look shit”. My response is to comfort the staff and tell them they should be proud of what they deliver and that they are always transparent. I am so thankful I chose to work for this organisation and that our systems are so hot on safeguarding.

I get ready for bed feeling saddened that despite all the lessons that should have been learned, abuse of that magnitude is still taking place. It goes round and around in my head whilst I can’t sleep; all those people in that room witnessing; what is wrong with people? If I were being kicked in the street would they all walk past?

Next day I arrive at work, my office colleagues begin a day-long dialogue with every visitor and colleague that comes through the door. This continues all day with staff just reaching out for comfort; all the management reassure them; we feel for them as they are scrutinising their practice and scurrying through risk assessments to check they are not depriving people’s liberty, they are all edgy and where they walk with pride in the community on an average day, feel like the world is judging them today.

People I work with are recruited because they share the company ethos, we are one of the hardest companies to get a job with and have little turnover, this documentary has made our beautiful fulfilling roles into something tainted and dirty. Yes, it has served a purpose, but day 1 for that journalist should have been enough, that poor person suffered at the hands of people with a need to control because of his greed to further his career. So many people have something to answer to following that programme. I go onto BBC i-player, grab the link and email it to all the managers, just in case anyone missed it, most didn’t and those who did later responded the same.

As the day progresses I get a couple of emails from families, they are of support for all we do, so my eyes begin to fill and I share the news and others are delighted for this desperate confirmation that not all the world sees social care as a negative.

A few days on and many conversations later our industry is still in shock and still responding. We all pray that senior management of all large organisations have their finger on the pulse because the image of that beautiful and vulnerable life on the TV being tortured and abused will never leave my mind.

Each one of us could be in a residential home one day.
It is up to all of us.

Monday, 23 May 2011

Oursenses - aconstant stream of information - hearing, sight, touch, smell, and taste being the ones we first think of but there are many others all working together – affecting each other – different intensities at different times – ‘a concert piece of stunts’ Barry Smith.

There’s also the sense of balance, temperature, proprioception, pain, acceleration and not forgetting internal senses of hunger, thirst, breathing, heartbeat, bladder/bowels, itches, sensitivities to different allergies, muscle tension, the sense of time. Etc. etc. And for C the array of senses that stimming and self-injury creates.

Many people are hypersensitive and/or hyposensitive. C lives in a very sensory world. And depending how he feels at any one time depends how he handles filtering the flood of sensory information. This can be overwhelming and cause C to fragment resulting in him hurting himself to try and block out the huge sensory distress.

As C has become older he has learnt different ways to self-regulate his environment when he can to cut out some of the bombardment. Fingers firmly in ears, poking his fingers in his eyes, humming and of course banging his head to block out some of the sensory pain and makes other people control the sensory input around him if they can.

So to have a room - a haven an oasis of calm where one can go to chill out, to relax, to process info in a controlled safe secure environment for people with huge sensory integration issues is sooo beneficial on many different levels.

The Sensory room that C goes to regularly because of cuts reform has closed which means not just one less activity for C but an activity that C got a lot out of.

These rooms enhance development of senses such as hearing, sight, smell, touch, memory and attention. They encourage spatial awareness, concentration, relaxation, imagination and alertness improving communication and vocalisation. Motor and cognitive development.

They can improve mood which gives you respite from overwhelming sensations and continuous self-regulating so restoring your spoons, balancing health and harmony.

I think we could all use some of that!

So instead of being upset about C’s sensory room closing it gave me an idea that I am very excited about. C’s home has a disused double garage which would be perfect for a multi-sensory room. And would mean C and his house mates could benefit from it every day as and when needed.

So I have started to look for grants. And am researching alternative cheaper options for some of the fantastic equipment that you can get these days. All ideas welcome. Have you a favorite?

It’s a positive project to do in times of cuts reform as they are already impacting on C’s life. And a positive project working together with the other parents and staff to benefit everyone :)
﻿

Tuesday, 26 April 2011

Cultural perception of disability has long standing historical influences and has been shaped by fear of the unknown.

Ancient Greeks disposed of imperfect babies. The Romans would throw disfigured children under horse’s hooves in games in the Coliseum. Witches were identified by their impairments or by giving birth to disabled children and burnt at the stakes. Changeling children were drowned. Ridiculed as Court Jesters and the village idiot. Differences were caused by maternal imagination if frightened when pregnant, sexual immorality, astrological factors and divine punishment of parent sins.

Fear of the unknown - difference – do we still have that excuse today?

Homes for the elderly reminiscent of the images of the old asylum’s still haunt us. Derogatory, demeaning, dehumanizing. It is still ‘them and us’. Frightening as we don’t want it for ourselves so we ignore it. 70% of us will become disabled as we age.

We in theory have come far from exorcism, bleeding, leeches, cupping, electric shocks, lobotomy and worse. Or have we? There are many therapies and treatments out there and some parents want to cure their child. This is one of the reasons the disability movement have not always seen eye to eye with the carer's movement.

Disability is a product of how we have set our society up. Discrimination, bullying, abuse, hate crime and oppression are still with us. We still struggle with getting on to transport, getting jobs, getting into buildings, communication. Many families/people still feel they can’t go out. Cutting benefits and services adds to the perception of burden that our society has to bear adding to the barriers of prejudice and ignorance. Keeping people stuck in the cycle of institutionalisation and dependency.

Many charities still exploit pity. Language is bias as we still use such words as; special, client, victim, user, marginalised, suffers from etc. We want to hear about independence, participation, inclusion, choice and more...

Monday, 11 April 2011

I don’t know how many pairs of socks C has gone through - hopefully we may have solved this…..

=

First had to get into C’s world to work out why pulling up his socks every few yards had become a repetitive movement. Not good when in crowds or crossing roads. What need did it meet for him? Delay tactic? Anxiety? Sensory? Etc

Anxiety? Using Intensive Interaction I tried pulling my socks up at the same time as C. When C does this he makes a very loud humming noise as he has to take his fingers out of his ears. So when I did it I made his happy sound a loud eeeek while looking at him reassuringly. It worked practically straight away. An amusing sight the pair of us bobbing up and down humming and eekkking. But I don’t care – if it helps C cope with his environment. And as I am focused on C I am not seeing the stares and judgements people are making, which I know happens anyway. Might even make some people think a bit differenlty??

But this didn’t seem to be enough so had to think of something more. Over the months C has been doing this I’ve tried different colour socks, seamless socks, trainer socks, expensive socks etc. Nothing made a difference and all socks would quickly end up falling down as with C’s impressive nails the elasticity doesn’t last long. It was suggested to put ‘wrist sweatbands’ over the top of C’s socks.

Worked a treat :)
Intensive Interaction isn’t just about mirroring but about feelings and motivations of what a person gets out of something. Connecting. Not just speaking their language but understanding it and responding.

Sensory? Deep pressure (from sweatbands - i did try them on my ankles first to make sure they wouldnt be be too tight) – has a calming comforting soothing affect. Helping to decrease sensory input. C also enjoys brief deep massages – and really hard quick hugs. And he will wrap himself up tight in a quilt. Large beanbags and hammocks C also finds very calming. I’ve wondered about weighted blankets (but do be careful as one young boy died) and hug vests. The blanket cuddle swings look good as do the body socks

But for now sweat bands are helping.Sweatbands may also be helpful for people who eat their cuffs – wish I had thought of that when C was younger!

Monday, 28 March 2011

In today’s fast moving and aspirational society, social care needs to keep up. Its evolving slowly - there’s a cultural shift towards personalization and our expectations are higher than ever. I believe personalisation can be achieved in small group home settings for those who are more vulnerable or would be too isolated in independent living. With motivated staff - flexibility and creative thinking of effective and sustainable ways to meet peoples needs and have fun, so as not to stifle life choices just because of a system. NT's take risks everyday!

Right to Control a 2 year pilot scheme has been launched which builds on personalisation. I have had some training in this so will be interesting to see how it unfolds as the government want to work towards disability equality by 2025.

Basic human needs are the same for everyone, the way we satisfy them is different as each human lived experience is unique. There are various models of thought on this, I like Maslow’s triangle (without the hierarchy) C relies on others to provide and meet these human needs for his well being to keep his anxiety arousal low so C doesn’t drop too many spoons.

Maslow says there are 5 groups of needs to be met to achieve personal growth and maintain a satisfying life - in simple terms..

Self Evaluating
The best life you can have.
Reaching your full potential.
Making the most of your unique abilities.
At peace with yourself.

The thought is we all have these same groups = I've just given interpretations of some of the needs I found on different Maslow triangles.
We are motivated by different needs at different times in our lives. I am also mindful of different climates, cultures and economic developments around the world.

C has to solely rely on other people for his most basic of needs for achieving and maintaining harmony - the result of his social and physical environment can unbalance his needs being met and makes C self-injure.

So when you have physically rebuilt some of C’s environment, changed everything you can, tried to rule out health needs, looked at communication profiles and if there is nothing else you can do maybe it is time to explore the option of medication so C has now been referred to see a psychiatrist.
C is depending on us to meet his needs to keep him safe and give him the best life he can have.

Monday, 7 March 2011

There are many forms of self injurious behaviour (SIB). C has tried lots over the years, biting, scratching, pinching, eye poking, hair pulling to name a few but non have worked so well for him as banging his head.

Not much research has been done into head banging – I know I have been looking for over 21 years! But we do hear of the accumulative affects it can have on boxers, footballers and music head bangers.

20% of babies head bang the majority grow out of it. C didn’t as for him it serves a number of purposes. Expressing feelings. Communicating a need - gaining control because of the actions of others, something in his environment, to feel grounded, distraction from sensory pain, distraction from a health pain, emotional pain, lack of self-esteem, self-confidence, expressing fear, frustration, despair, anxiety, anxiety exposure, pressure, avoidance, wanting something, releasing adrenalin or endorphins (feels good!). Etc. C of course is a person first and not a collection of behaviours/labels.

I realised very early on that because of my mother’s instinct to protect my child from pain I would give into C’s SIB and other challenging stuff rather than trying to teach him other coping strategies/ways to communicate. At the time it was easier – for ME. But I realised long term this was not the right route to take for C. In those days local SLD schools did not have enough knowledge, so I fought hard to get C into a specialist school. I am very glad I did as over the years with consistency, understanding and hard work C has made huge strides and we don’t see many of his childhood behaviours now.

Because head banging for C covers so much it is not always easy to know what he is trying to tell you. And its not for lack of him trying. All behaviour is for a reason. It’s a coping strategy a way of communicating, but C does rely on others to work it out and then sort it out. And because we don’t always get it right as we literally don’t know what he’s trying to tell us ‘we’ end up shaping his behaviour. "Suit you, sir?"

As C has become older, bigger stronger so his need to find hard surfaces to hit his head on has increased. Possibly as his skull has thickened where he hits it? Or possibly the sensory pain from his environment has increased for him? Or he is less tolerant as to the speed we can work out what he’s saying? I don’t know.

We are looking at how to make door frames safer - its not straight forward because of fire regs.

C won’t wear a helmet. He cuts his head open on the edges of door frames - but won’t let anyone cut his nails. Shows how diverse sensory issues can be.

It is very frightening this need to escalate. And we must be careful not to allow our own fears to shrink C’s world – it’s something C and I have worked hard on over the years to open up.

So we need to continue working together on helping C learn other coping strategies, choices and ways to communicate his needs. C is fortunate he has a team to help him and I am a cog in 'Team C'. ( Carers are now getting better recognition as expert care partners and valued as we have historical holistic knowledge) We continue building C’s community and our understanding.

A best interests meeting was called to discuss emergency medical treatment and ensure there is a clear plan around what to do – a reactive management plan with a gradient of responses for worst case scenarios. I found it quite tough as it’s a subject people avoid talking about. But this is C’s reality. And the outcome of the meeting was very positive and reassuring.

Proactive work needs to be continued looking at alternative ways for C to communicate. Intensive Interaction is the way forward I feel for C for this. To keep his environment safe but without isolating him. ‘Engagement in meaningful activity’. C loves the local sensory room but with cuts this is closing (maybe C's home should buy it?). He loves to be out and about so staff have to feel supported and confidant. The staff are the backbone – the reflection on how C is doing.

C needs much support which comes at a high price just to keep him safe and have a life like everyone else. At this time when the LA’s are making massive spending cuts it is very worrying indeed.

Thursday, 27 January 2011

C is 22. And only in recent years he has ‘allowed’ me to give him a quick kiss. On his forehead (if he’s in the mood to bend down) or on his nose with my finger. His terms of course – but I don’t mind. And he has never given me a kiss.
Something is shifting in C’s development. I can’t quite put my finger on it yet. It’s always at C’s pace, you can’t push him or even encourage too much him (but maybe with II we will be able to?) as he will retreat and shut down. So you introduce him to something, leave it around – maybe the same day – the next day – a month – a year – never – sometimes he does something that blows me away. Today was one of those days.

I’ve always had mirrors about the house (since getting over the stage when C used to smash everything!) – something Donna Williams said once stuck with me years ago when I read Nobody Nowhere.
6 months or so ago I noticed C looking in the long mirror in his room – a first. And over a few weeks I noticed him watching himself or the person in the mirror. And then big stimming in the mirror. C is very hyposensitive – constant motion. I joined him in the mirror and he thought it was hilarious! I put a second full length mirror in his room and he suddenly seemed to notice more of what was around him as he started tapping the walls and windows with his hands (something he does with his feet (exploring where the wall/floor starts/ends) – but never with his hands) to do with the vestibular system and where you are in space. It was if he is beginning to make sense of where he his – maybe who he is?? Or that - ‘he is’- (developing a sense of self?)

Yesterday I put a hand mirror in his room. Today I noticed it had moved. I picked it up and saw lip prints.

Yes I know he was poss just smelling it, tasting it. But my first thought with a tear welling in my eye was – he gave himself a kiss.

Wednesday, 19 January 2011

So basic, so fundamental, so obvious (when you know). Filled me with excitement. Very emotional. Hope it does the same for C.

And just as exciting, C’s service provider had listened to me and sent 4 staff on the same workshop. I could see the staff embrace it, they were also excited and motivated - empowered. We were all on the same page (hopefully improving communication between us too).

Staff left the workshop with a plan of action to start connecting with C straight away.

I want to let out an ear piercing, glass shattering, public scaring high pitched loud expression of pure unadulterated joy EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE beat my chest and slap my back peppered with a few 3 foot high jumps from standing – as C does.

But I will have to wait till C is home so I can share his inner world with him, share C’s language, as I mirror him. Acknowledging and validating, confirming his existence, showing C I am listening, I respect and celebrate him. This is in essence the building blocks of Intensive Interaction.

Giving C the confidence the self-esteem and motivation to explore communication further.

Thursday, 6 January 2011

I recently went to a talk given by Dimensions who described transition from child to adult services similar to falling off a cliff. I would like to add when you reach the bottom there’s also an undercurrent as well which you can’t see and don’t expect.

I should have anticipated this in the light of the I Exist NAS campaign. But I didn’t and I am struggling with what adult services have to offer from what I have seen so far for someone with C’s level of ability and challenges (no disrespect to staff as I know they are doing their best with the training they have)

C went to a specialist school. It was full on – he had access to many basic therapies, was a part of a thriving community and the curriculum was geared to him. Lots of access to different opportunities/experiences. He leaves school and we fall off the cliff. All the stress of various battles over the years - all that education and for what?

Or this is what it feels like to me. (And its not supposed to be about me. But after 16 months C is not as settled as i would like him to be)
I don’t get it. Why do the expectations change in the adult world? Why do old stereotypes ‘still’ exist? Why don't care homes seem to socially evolve? With all the new regs about dignity, equality, human rights acts etc etc why are many attitudes still so out of date?

Something I had never heard of. But something I unknowingly do naturally with C. A good example is the post I wrote about C’s and my first clubbing experience. I have now read every book ever written on the subject and through googling I found a local organization that run workshops using Intensive Interaction! I went to one of their meetings for practitioners across the SE and sat there overwhelmed - stunned - fighting back the tears listening to their stories that here were a group of people passionate about making a difference to 'pre-verbal' people’s lives.

At the same time as this was unfolding I was in talks with C’s service provider about – 'is this it for C'. And the service manager asked me what they could do – out of my handbag I produced an Intensive Interaction book. She had heard of it so I pushed my luck a bit further and produced an application form for a workshop.

They are sending 4 staff on the course. As you can imagine I am over the moon. I am also going on the course – and am really looking forward to ‘working together’ with staff and with C.

All this came about through blogging. Through chance. Something I will not leave C’s future too.
So thank you everyone. I will keep you posted how it goes.